Thursday, June 13, 2013
It's a mystery, so far
Some of my lab results are back, and there's some good news in there. My IgM level (a blood protein that's a marker for the disease) is the lowest it's ever been, at 1160, so first guess is that it's not the disease, come roaring back. There are more results that aren't available yet, in particular an analysis of the bone marrow sample that Dr. Treon took in Boston, so that's still a tentative conclusion. My blood iron levels are in range, so my body is apparently absorbing iron appropriately. So what could it be? Well, if the bone marrow is crowded with Waldenstrom cells, that could mean that the disease is active and crowding out the production of red blood cells, but then it's a question as to why the Waldenstrom cells aren't producing more IgM, and why the Rituxan treatments stopped working all of a sudden. Another possibility is that the anemia is unrelated to the disease. It's a fair bet that various unpleasant -oscopies may be in my future.
Wednesday, June 12, 2013
Someone else's story
This was posted to the IWMF-TALK list today. It's the story of a broadcaster in the UK who recently died - at the young age of 48 - from WM. Here's something he wrote earlier in the progression of his disease.
http://www.dailymail.co.uk/health/article-552311/Radio-4-newsreader-Rory-Morrison-announces-Ive-got-cancer-I-refuse-let-beat-me.html
http://www.dailymail.co.uk/health/article-552311/Radio-4-newsreader-Rory-Morrison-announces-Ive-got-cancer-I-refuse-let-beat-me.html
Relapse?
I just finished 2 years of "Maintenance Rituxan" back in March, and up til then it had gone very well. My hemoglobin levels had returned to normal - I wasn't anemic anymore. My IgM levels had dropped down to around 1300 (the high was somewhere around 3000 when I was first diagnosed), which is well above normal, but is much improved and not very dangerous. But then early this month, I went for my 3 month checkup and my hemoglobin level has dropped back down into the "anemic" range. Now this could have several causes: the disease may have come roaring back, although it's unusual for it to roar like that. It's generally an indolent, or slow-moving, disease. I could be losing blood somewhere, although there's no obvious evidence of that. Or there could be something going on, perhaps related to the disease, that's killing red blood cells. Or it's possible that something is preventing my system from absorbing and processing iron, the "key ingredient" to hemoglobin. So I went back up to Boston on Monday to see Dr. Treon. He did a bone marrow biopsy, to gauge the level of the disease, and also took several vials of blood to test for other eventualities. I should get some answers - or at least some next steps - late this week.
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